Question
Peripheral neuropathy from taking D4T (stavudine).
25 February 2022. Related: All topics, Changing treatment, Side effects, Supplements and herbs, Support.
I have been taking D4T (Stavudine) since beginning my treatment for HIV in 2003. After several years, my CD4 count remained low and viral load elevated. My Dr was advised me of right the side effects but did not stop the treatment right away, saying that the side effects were irreversible anyway at that point. Another Dr stopped D4T right away!!!
I am now suffering of painful peripheral neuropathy in my two legs that started at the knees to the end of my feet. It has been going up my legs slowly for over 18 years, it is more painful everyday. I can feel that my legs, feet, ankles and muscles are getting worse with time. My reflexes are now altered as I get hypersensitivity, mostly permanent now. I feel like I am in shoes too small even when I am barefoot, it burns. I am having kind of electric shocks all the time, my feet and lower legs are permanently asleep.
I was at pain clinic in Montreal for few years with a very good Dr, but not used to that kind of pain. He did not find any treatment that could help. I am writing you these words crying. I wonder what is my future… I am scared that one day I wont be able to walk anymore. I really don’t know what to ask. It look a lot similar to ‘Charcot Marie Tooth’ which does not have any treatment either I believe. Is there any research done on this?
I just hope no one anymore is taking this medication. I think that the company that were supplying me the medication should be responsible to do some research and pay for all my medication. Well, I thought I could maybe dream a little bit. Thank you! for reading anyway. Hoping to hear from you guys.
Answer
Hi, I am so sorry to hear how you have suffered the side effects of D4T.
When you were speaking with the doctor in Montreal did anything have any effect on your peripheral neuropathy? Unfortunately this side effect from D4T is not reversible and it’s important to find a way to manage this that suits you. What medication are you taking now to manage HIV?
Managing peripheral neuropathy can be difficult but please don’t give up in trying. Pain medication is only one method of management. Anti-depressants might also be of benefit, different doses can be used to treat pain instead of being used to treat depression. Though this would require talking with your doctor. Capsacin cream is also an alternative – this is thought to work by inhibiting nerves from sending pain signals to the brain.
Given how troublesome peripheral neuropathy can be, alternative therapies may be of use. In the UK, the NHS suggests acupuncture or supplements. The evidence base for this is not strong but some people do find benefit. Another aspect would be to consider mental health input. Cognitive Behaviour Therapy (CBT) can be used to help manage pain.
This is not Charcot Marie Tooth (CMT). CMT is inherited and is a disease concerned with peripheral nerve atrophy. Often this presents more in childhood and usually causes discomfort rather than pain.
Fortunately this medication is not routinely used anymore. Often combinations that use stavudine are now replaced with tenofovir. I am sorry to say that compensation is not possible. BMS developed and marketed D4T, however they do not offer compensation experiencing side effects from their medication.
If you have any further queries please do get in touch and I really hope your health improves,
Josh.
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